If I get Alzheimers that's so bad I need to be treated for agitation, I hope they give me the drug that will kill me off sooner. That's not a life worth living.

3:34 pm January 9, 2009

sally wrote :

WhoCanWeSue.com???

8:11 pm January 10, 2009

Anonymous wrote :

I wonder if there is any attention paid to the quality of life issues and the benefits in that area for patients and their family members when this sort of information is disseminated.

4:43 pm January 11, 2009

anonymous wrote :

My mother, diagnosed with lewy body dementia, was in constant terror, hearing voices threatening to kill her. 8 years later on antipsychotics, she is still living with me with assistance from home attendants. Care has to be taken to not over generalize and deny medication to those who need it.

5:31 pm January 11, 2009

chriscql wrote :

An antipsychotic relieved my dear alzheimer-ridden aunt's agitated state enough to allow her final year to be one that allowed her to visit with friends, enjoy outings and simple games with caretakers...even though she didn't remember them happening or, toward the end, how to put a cracker in her mouth.

The study used 3 first generation APs and Risperdal. It seems that a study utilizing newer APs only is appropriate. Is valproate still used?

11:22 am January 12, 2009

Texas Attorney Mom wrote :

I echo the comments above about weighing quality of life against the shortened physical life span. I recently drafted a trust for the husband of an alzheimer's patient. He was so proud of the fact that his wife's doctor said she had lived at least five years longer because she was receiving good home care. However, on each of my visits to the home, she was a shell of a human lying in her bed with the tv on for company. She did not know her husband or her son. The extra time was not a benefit to the woman.

My son knows that when I no longer recognize my loved ones and slip into that status of not really being present, don't take any heroic measures to keep me going.

11:59 pm January 13, 2009

jesse james wrote :

I can't believe what doctors say. It is all so contradictory.

7:06 pm January 14, 2009

Anonymous wrote :

I strongly concur with those who speak for quality of life over length of life. One of my patients has lived with Alzheimer's for 10 years. He is now near the end of his journey and suffering from severe anxiety. At first his wife wasn't able to accept that she was going to lose him and didn't want antipipsychotic meds to be used because it made her husband sleepy. She was not making her decision as to what was best for him, but with what she could live with. As hard as it may be, it is imperative that we put the comfort of our loved ones first - even if that means shortening their life by some measure.

10:06 pm January 21, 2009

Carol wrote :

Mom was put on risperdol and haloperidol for an unusual psychotic reaction to barbiturates. I saw that she was not herself and refused to allow them to medicate her. She was dying from bad hospital care ie a shortage of nurses who did not know that she was NOT an alzheimers patient who did not need sedation. Her anxiety was from barbiturates, ie downers which were killing her. Each time they heavily sedated her for pain, she reacted with an anxious psychosis. I had them write in large red letters on her chart that there is no permission to sedate her. They warned me that if they untied her wrists, she'd get up and break a hip. I put a night aid by her bed and she fully recovered and is living well, independantly. She was misdiagnosed for a simple problem of diverticulitis. For that, she was given a pace maker and was being helped to die with those meds and heavy sedation! Stand your ground and be with your loved ones. They kill them in FL hospitals.

11:27 am February 5, 2009

Gerard wrote :

My grandfather died of Alzheimers as did my father just last year. I wonder why doctors are not pushing a research done in 2005 which proved that cannabis can not only slow the progression of the disease but can also protect the brain by preventing microglia activation near the plaque deposits caused by the disease which lead to inflamation of the brain.
As if that were not enough it would aliviate their pain and give them a better quality of life. Am I the only one who sees the benefit?

8:09 am February 12, 2009

Lianne wrote :

My mother is an Alzheimer's sufferer, and a victim of severe childhood trauma. As her disease progressed she is constantly reliving that trauma, and as a result has been acting out with aggression during personal care. This has been going on for years and there are ways to reduce the tension during those times. However, from the day she went into a nursing home three years ago she has been on a series of antipsychotics, from Zyprexa to Risperdal to Seroquel and finally, to Haldol. The medications all work the same way, and so if one wasn't working, or two, why keep switching, instead of realizing they are not working for her? In October '08 she had a sudden huge drop in her abilities and was sent to a psych hospital for evaluation. The VERY good hospital took her off the Seroquel she was on at the time, and she rebounded, and was sent back to the home. Then one weekend she hit another resident and legally needed to be sent out again - this time the original hospital had no bed so she ended up in a standard hospital with no experience in geriatric psychiatry. They did nothing, and ten days later when she returned to the home she was much worse. Not talking walking or looking at us. Her deliriums were worse. Finally her doctor prescribed Haldol, and then did I finally realize the seriousness of the class of drugs they were prescribing, and did some checking. I refused the Haldol based on reports I read of terrible side effects and was told I was being uncooperative and that Mom wouldn't be able to stay in the home. So I trusted the doctors again. Threeweeks later she was refusing to eat or drink, punching, kicking, biting and looking terrified. I insisted they send her back to the first hospital.
Again, they immediately took her off all antipsychotics, and told us that the series of drugs and length of time she was on them (over four years when recommendation is no more than 12 weeks) caused her to have mini-strokes, which is why she lost her cognition faster than average, caused her Parkinsonism, which is why she lost her ability to ambulate, caused her recent pneumonia, and actually CAUSED her increase in delirium.
The bottom line is that these drugs hastened my Mom's demise, and it was because the doctor continued to prescribe one after another even when it was obvious that class of drugs was not working on her.

There are plenty of cases where these drugs give the patient and/or their families a measure of relief from horrible symptoms. But there are others on whom they don't work, and for all there are terrible side effects that may not be worth the risk. In all cases, try changing the atmosphere around the patient first, treat him gently, avoid triggers, try rescheduling care to a better time of day. Eliminate unnecessary actions.

If your loved one IS prescribed one of these drugs, make sure it is the lowest effective dose, watch for signs that it is working and stop immediately if it is not.

4:11 am March 26, 2009

swapnakaj wrote :

This is a very informative and helpful blog and I always recommend it to others involved with caregiving. Great!

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